Learning Urination w/ Neobladder

Hey Mike,
As soon as I sent that message to you I seen your post date. Guess I need to be more aware of that. You know some times at night I will void 400cc to 500cc and other times it’s 150cc to 200cc. But I’m sure you know it all depends on the oh fluid intake and amount of time you hold it before bed time. Right now I’m voiding every 4 to 41/2 hours and getting about 350 to 400cc’s. Getting up every 4 hours is going to be tough when I get back to work next week. Well just wanted to touch base with ya.
Best wishes Steve

Thanks Steve...
You should know that my original message was sone time ago. I've been tubeless for several weeks and I agree... laying on my side and even stomach is GREAT!

An update from my side... seems like I'll bear down and get a good stream going but after a bit it stops. I'll wait 5 - 10 secs and bear down again and start it over. Volume and such seems good (350 mL) but I do miss that one long pee (lol). I will also say that occasionally I do have issues, usually at night where I can only manage 100 - 150mL and even that is tough. Seems like I just can't get my pelvic floor to relax???

Hey Mike,
Just read your concerns and let me tell you are doing fine. I’m not a doctor but I am six weeks out from my surgery, RC/ Neo bladder. I am about two weeks behind from where I should be due to some complications. I just had my superpubic removed four days ago, believe me every thing will be so much easier for you when you get it out. OK, in my case when I was standing up and voiding I would void about 150 to 200cc every 1 ½ hours I would then sit down push again and I would get another 25 some times 50cc more urine, so don’t worry to much about it. I find that if I lean to the right and bear down I get more urine out rather than standing. This can only be due to the position of the neo bladder. As for your bearing down as if you would for a bowel movement that is the way it is and that is the way it is for me. When I first started it was dribbles then small flows now I void a strong stream as I did before the surgery. As long as I keep bearing down the flow stays strong as I let up the flow eases up or stops. You shouldn’t have to bear down so hard that you actually have a bowl movement. Believe me I was where you are now a short time ago and I am now voiding every four hours and depending how much fluids I drink I void 350 to 400cc at a time. After the superpubic comes out you will progress quickly, and let me tell you being able to lie on my side again is heaven.
Best wishes Mike things will get better believe me.
Steve

Bill & Mike,

I have a slightly different description for you about how to push to pass urine with your neobladder, and perhaps it's because I'm female that I do it this way.  Not knowing how the male anatomy affects the way you now void, but here goes.  When I push it's more from the abdomen (front of my body) than it being as if I'm having a bowel movement which is more from the back.  Perhaps it's like pushing when giving birth, but since you fella's haven't experienced that it may be harder to visualize.  Think about it a little and it will probably come to you.
I have something else for you to try, and this isn't something you will use all the time but you may need it if you're having trouble emptying your bladder (low caliber stream).  This is something I did long before I ever had a neobladder and had nothing to do with urinating, but I have discovered when I do this it also makes my bladder empty at the same time.  I used to have (actually still do have sometimes) a problem with constipation, and sometimes (please forgive this discription) when this would happen and the stool was right there but would not come out, this is what I'd do.  I'm right handed so I used my right hand, so I would push right next to my anus (on the cheek next to it) with the ends of my fingers (I also had toilet tissue on them) and this would help me pass my stool.  Now with my neobladder in the beginning my surgeon told me it was a good idea to be more on the constipated side of normal, and with that said I would have those problems from years previous and so I tried the same technique to help pass my stool, and that's when I discovered that my bladder emptied at the same time.  I hope this isn't too gross or too funny for you, but I do hope it's something you'll remember if you're ever in the same situation.  It also works even if you're not having a BM, to get your bladder to empty a little faster if it's sluggish.
Good Luck...

Lou Graham

Bill,

Thanks for your responce. As I stated, it's just good to know you're on the right path (or not) from those that live with the changes. I am staying dry during the day very well. That seemed to come pretty naturally. The slight ache or little "spit" is a sure sign to get to the bathroom. My evenings are not quite so successful (yet). While I am setting alarms every 2 hours or so, I find myself getting up to a very wet diaper/shield. I am hopeful that with continued Keagles this to will improve. I have only been bag free at night the past 4 evenings so while I am a little frustrated, I know it takes time.

Currently I am holding 250-300mL and yes, my Uro did warn me of hyper-continence (stretching it too much). I can't remember off the top what his limit was but he did tell me to expect to go to around 450mL.

Again, thanks for your reply and your complete story.

Hi, Mike. A friend asked me to respond to your posting, but this will have to be a partial response because there are some things I don't know about your particular surgery. Specifically, I never heard of a superpubic tube. Something like a stoma in your abdomen that you can peer into, collect urine from, comes with a cap? Never heard of it. Glad it's leaving you in a week.
So you have a neobladder, and I'm assuming you got a urethral reconnect and will hereafter pee through the same gadjet you always have. Me too; Kock pouch, done at USC/Norris Cancer Hospital in 1998.
My story is in Tales from the Trenches. I'm Bill K. Look at it because in answering you here I'll refer to some things in that Tale.
Urine control comes gradually, seemingly slowly, but it comes. You'll be able to speed it along with Kegel exercises, but in that connection read the horror story in my Tale about strengthening the pelvic floor muscles so much that the excessively stretched neobladder perforates and it's either quick emergency surgery or a painful death from peritonitis. Your surgeon gave you a "shouldn't exceed, maximum volume" number and you can test it by peeing into a measured bottle.
My Tale also has a description of my ingenious nighttime continence pad made from a #1 size baby diaper. I still need it at night, even with a timer-beeper set to wake me every couple of hours. It won't be long before you'll need nothing at all in the daytime.
You know by now that the intestine is muscous-producing tissue, and you'll blurp a little out every time you go.
Yes, you have to push, sort of like for a bowel movement, a pressing inward with the abs. Without pushing the stream will indeed be weak.
And yes, you'll be saying "close to normal" about your life with your neobladder. Without that muscle wall that's around the old fashioned bladder, you'll never have a "gotta pee" feeling, maybe just a slight ache or a little squirt if it's getting stretched too much. You gotta be a clock watcher instead.
My Tale also has some vitamin/supplement suggestions, said to ward off recurrences. All I know about their efficacy is that I feel good and haven't died. Mike, I hope you have a fine recovery and a long life.